My cells came back last week. From collection to arriving back here, it was about 4 1/2 weeks, which was quicker than the doctor was expecting. All of a sudden there is a flurry of medical things happening. Lots of tests, lots of meetings and driving everywhere for it all.
I have dates for everything now. 3 days of lymphocyte depletion next week. My Car-T infusion is set for August 26. Hospitalization a few days after that.
Today, I’ve been having a lot of meetings about all the drugs they want me to take.
“You’re going to take this drug for this, and it’s going to make you feel like crap”.
“And you’re going to take this drug for that, and it’s going to make you feel like crap”.
“And this drug over here, that’s going to make you feel like crap as well”.
I’m starting to feel like crap just listening to how crappy I’m going to feel 😜. This is all without even counting the side effects from the Car-T.
Sigh, modern medicine, it’s really good at making you feel like crap. “Feeling too well? Well, we have a medicine that can fix that!” Too bad nobody has that problem…
It will be an interesting and intense process. I hope the end result is what I’m hoping for. My doctor told me a few days ago that he wants me to leave from the hospital and the infusion center to be at MRD zero. Which is also my goal (MRD zero is zero myeloma cells detected in my bone marrow). Afterwards I was thinking, if I didn’t achieve that from the Car-T, how would he achieve that?
“Jothi, you haven’t reached MRD zero yet, so we are going to give you and extra portion of MRD zero sauce on your food to get you there!”
Speaking of food, I had some myeloma labs done. I haven’t had any done for about 2 months. I was expecting the numbers to keep elevating at the same rate. When I was on carfilzomib and dara, my light chains were going up 12 a week. As I mentioned in my CAR-T post, when I stopped the chemo, things slowed down a bit.
In the past 2 months, I went up 16 points total! 8 a month. That gave me an unexpected shot in the arm. Again, I find it weird that the cancer was progressing faster when I was receiving treatment. My theory is that the chemo was punching down my system, which must be dealing with the myeloma on some level. Once I recovered, the myeloma went back to a crawl. Diet, exercise and de-stressing are making a huge difference for me.
Which gives me quite a lot of hope for Car-T, since I won’t have any maintenance drugs to punch me down. The cancer will die and hopefully diet, exercise and de-stressing can help take care of the rest, or at least make whatever is left over myeloma’s life miserable.
Turmeric, green tea and broccoli for the win. I’ll go over more of that in my upcoming post, My Car-T Strategy.
P.S. I forgot to mention that the maybe/maybe not tumor on my spine hasn’t shown up physically inside or out, so I’m leaning towards it not being there.
Part of my Car-T prep was to have an echocardiogram to check out my heart. The test showed I was mostly fine except for a potential problem with one of my valves.
This was a new problem from either the high dose melphalan or more likely from the carfilzomib, since that is known for beating up hearts.
Anyhow, they wanted me to have an MRI of my chest to further investigate my heart. I got the result back last night. I showed that my heart is perfectly fine (thank goodness).
“Grossly unremarkable”
That was the term they used, which is actually pretty funny.
I turned to my wife and told her, “I love you with all of my grossly unremarkable heart”.
We had a chuckle and I kept reading the report.
“An osseous lesion noted within the midthoracic spine, incompletely evaluated on this study”.
Son of a gun!!! Where the heck did that thing come from. I just had a pet scan a few weeks previously, and it didn’t show anything!
This was an (unexpected) blow to me. I haven’t had a lesion since more than 5 years ago, when I was first diagnosed. Now I have a little bugger popping up it’s head in my spine!? The ups and downs of myeloma 🤦🏻.
I needed to reset my head. I went and had a shower and then went outside and did some Qigong and meditation. Qigong and meditation are my go to for (re) leveling my head.
I’m still working out the last dredges of it from my system today.
I was cutting up some mushrooms for my lunch today. The thought popped into my head, that myeloma is a lot like mushrooms. Myeloma percolates in a person’s marrow, just like mycelium in logs for mushrooms. Then all of a sudden, when conditions are just right, a lesion seems to pop up, just like a mushroom after a rain!
Grrr….. I don’t know what the doctor is going to recommend yet. Radiation, chemo, leave it be? I still have 3-5 weeks until my engineered cells come back.
Looks like I haven’t written anything for awhile. For no particular reason; I guess I just haven’t felt inspired. Hmm…. I wonder what has happened recently in my myeloma world.
I had a bone marrow biopsy (maybe in January?) to check my MRD status. I went up to 27 myeloma cells in a million. That was from about 1 in a million. So that was a bummer to see. MRD is pretty cutting edge. Nothing showed up on my blood tests, although the following round of blood tests showed my m-band moved to “detectable but not quantifiable”. BLAH, it would have been nice to hit MRD zero and stay there.
My oncologist didn’t want to make any changes based on MRD as most oncologist would follow. The myeloma specialist then spoke to the oncologist and then had a meeting with me to talk things over. He said that the numbers were not trending in the right direction, and what was the point of waiting until things significantly elevated. The specialist said he went through the list of drugs and wanted to add in a drug that “wasn’t going to do me harm”. He recommended adding back in Dara to punch the numbers back down.
I was on Dara prior to transplant, but Stanford stopped it because it was not working fast enough. Since it didn’t seem to give me any problems, I agreed to go back on it. If he was recommending something like cytoxan, I would have said no.
Well, as it turns out, side effects can change post transplant. I had my first dose of Dara with carfilzomib and it was rough. I turned into a 90-year old, with super fatigue. My skin on my torso also went hypersensitive and wearing a shirt was unpleasant. Too bad we were still in winter ❄️. That lasted for about a week. I had another round two weeks after the first, and the same thing happened again. The oncologist was baffled. We ran some blood tests, but nothing showed up. I’ve noticed that if something is out of the ordinary and not listed on a clinical trial, the oncologist is left bumbling his bottom lip and saying, “Good luck with that”.
Fortunately for me, by the third dose, my body was getting used to the drug and the symptoms significantly lessened. I didn’t have any of those symptoms by the fourth dose. So I’m back to being left with the few days of being miserable from the carfilzomib side effects. Maybe the cancer gods will show me some favor and things will get good enough to eventually drop the carfilzomib and just stay on the Dara.
But then again, at this point, I’m pretty sure the cancer gods don’t like me very much 😜. But then again again, they just updated all the five year cancer survival rates, and myeloma is now 59%. I’m going to hit 5 years soon. Not that I attribute that to the cancer gods, I’ll take the credit with my efforts.
I guess the other thing physically that happened was that, I developed a frozen shoulder. Possibly from the chemo, they aren’t actually sure what causes them. It’s quite bizarre. I can’t raise my right hand or arm above shoulder height or move it in an outward direction. I guess the tissue surrounding the “ball” of your arm, that goes into your socket, just seizes up. It can take 8 months to 2 years to “unfreeze”. Fortunately, it looks like I’m going through the stages at the faster rate. I’m sure the infrared sauna and turmeric are helping. Too bad my muscles didn’t freeze in a better spot 💪🏼. Imagine having your six pack be frozen and being ripped for 2 years.
Let’s see, I guess I have some blood numbers to share, here you go.
My medical provider made it a pain for me to transfer over my data, so that’s why I don’t post much about it (plus, I don’t have blood run much these days). Because of my weird side effects from the Dara, they did run a whole metabolic panel. My red blood cell numbers are still low. From the metabolic panel, they ran iron.
As you can see, my iron is quite well, from all those goji berries and beets. So my poor red blood cells are just quite beat up from the chemo. I thought that was interesting to see.
Well, I can tell your attention span is beginning to wane by this part of the post so I’ll be quick with the rest.
I made it to a succulent nursery, “Succulent Gardens”, down by Monterey, that I always wanted to go to. That was pretty awesome to visit. I’m a huge succulent fan, as you may have noticed from the pictures on my website. They supply plants to a lot of the other nurseries in California, so I was cool to visit the source. Here are some pictures.
I took a mushroom propagating class at a local collage. I sort of knew how to grow mushrooms from books and the internet, but I wanted some hands on training. So I know how to do that now. I have mushrooms growing inside the kitchen cupboards now. Hopefully at some point I’ll have a bigger space to really get into it.
Preparing mushroom growing media.
Finally, spring has sprung. Here are my irises that I planted last year. They had a year to grow and be undisturbed, so they are happy. Yukon likes to eat the grass around the pot.
This post probably should be called Why Should I Rub My Kidneys? But knowing how to, probably more specifically, where they are to rub, is more important.
Known as “The Root of Life” in Chinese Medicine. They act like batteries for Qi, or energy, for your body. I like to get up in the morning, have a big glass of warm water, and rub my kidneys to charge them up for the day. Your kidneys filter the toxins and waste from your body, and you get rid of that via a direct connection between your kidneys and bladder.
In TCM, the kidneys are also responsible for the production of bone marrow, which governs your bones, brain, spinal cord and obviously your marrow. So anyone with myeloma, blood or bone issues should take extra care of their kidneys. Renal failure or kidney failure is one of the main ways people with myeloma die, getting plugged up with all those extra light chains. These guys are very important to keep running well for everyone, especially people with cancer.
If you don’t believe any of this or none of this makes sense to you, who doesn’t like a good back rub? It just feels good, and you can do it anytime and while doing other things. I rub my kidneys while I cook, because there is a lot of little snippets of time in between things. Rubbing them, while standing and having a chat with a friend is also a good time. If you are too sick to do it, you can get help or get a little electric massager to do the job.
So, where are your kidneys located for a good rub?
All you have to do is find the bottom of your ribs on your back. Your kidneys are a little under your ribs at the top, and the rest are exposed right under, on either side of your spine.
In this picture, my hands are right up against the bottom of my ribs, so that’s the level for my kidney massage.
There are also two thin tubes of called ureters that run between your kidneys and bladder. I also like to rub from my waist to my kidneys to get those a bit of a massage as well.
The actual kidney massage should be whatever feels good for you and your body type. You can go clockwise, counterclockwise, back and forth, and up and down.
Using a closed fist versus open hands will change the feeling as well.
In this video, I’m using the Qi Gong method of massage, using the acupuncture point, Large Intestine 4, or the Great Eliminator, on my kidneys. If you make a V with your pointer finger and thumb, the spot is at the bottom of the V. (LI-4 is also a good spot to rub in general or if you are going through some constipation)
I do find it interesting, as I’m currently going through carfilzomib. I can feel my kidneys working hard a few hours after the infusion, especially when my urine turns a putrid color. I can feel that my left kidney is having a harder time with things than my right. I make sure to drink lots of fluids and rub, rub, rub especially on the left.
It’s a minimal commitment to do and another simple tool to put into your well-being toolbox. Give it a try!
I haven’t been inspired to write much as of late, as you can tell by my lack of posts. I was just more interested in doing other things.
Not much is new. Still doing maintenance carfilzomib chemo every two weeks. I still get high fevers from it every time. I’m into the 103 degrees now, so it’s been a challenge. I’m signed up for the flu every two weeks. Blah.
I went out to San Francisco a few weeks ago to visit my brother. We went for a hike at Land’s End, which I had never been to before. It was a cloudy day, but it was still scenic. It was pretty crowded, since a lot of people were off from work because of the holidays.
We hiked down to the ocean, and I found a big rock to climb up onto that part of it was in the water. I sat down to watch the ocean. California was having a storm coming in, which made the waves quite large. It was very satisfying watching the waves come in, break cleanly, and then smash into the rocks.
I’m always amazed by the power of the ocean. I’m also equally amazed, how rows of rocks in the ocean can dissipate that power. Waves that seem to be coming to run you over and churn you into dust, just dissipate into nothing. It’s fun to watch.
My view from the rock
I had a bone marrow biopsy the other day. I agreed to it 6 months ago. The myeloma specialist wanted to check on things, more specifically, he wanted to check my MRD status. Last time, I had 3 myeloma cells in 2.6 million.
Coming up to the biopsy, I was wondering why I choose to have it done. If it’s MRD zero (zero cells in a million), which would be awesome or if it showed 100 myeloma cells in a million, I’m not sure what would change much currently.
I suppose I would get a mental boost if it was zero, but what if it was worse? Would I feel dragged down? What am I going to gain from this? I feel pretty level-headed about it all, no matter what the result is, but those were my thoughts leading up to it. Anyhow, I just decided to go ahead and do it, because the specialist thought it was important. He probably knows more about myeloma than I do 😜. Maybe he will share with me his thoughts sometime. My regular oncologist was against it (mostly because of the cost for the hospital), but I twisted his arm (go figure, twisting an arm to have my marrow sucked out).
They take the bone and the marrow out of the iliac crest. I had them take it from my left side, because that’s where I had it done last time, and MRD can vary from location to location.
So I hopped up on the procedure table, face down. The nurse then came up and pulled down my pants to expose my butt. Then she tucked in some disposable cloths to my pants to contain the blood.
I’m lying there with my buns just hanging out. Minute after minute pass, and the nurse finally says, I’m going to find out where the guy is who is going to do the procedure. She flies the door open to the busy hallway and disappears.
“Don’t mind me, I’m just airing out my buns”.
She comes back after a few minutes and says he is at the hospital next door and will be here shortly.
Five minutes later, he comes in and says hello, and says he brought a friend to come and watch (he really said, can I have my student in here to observe?).
In my head I say, “sure, I’m lying here exposed, let’s get a bunch of people in here”.
Now, it’s a good thing I don’t actually care. I gave up caring about people seeing my butt awhile ago.
They numb me up as much as possible and start getting to work with the core needle, a needle so strong and sharp it cuts bone. Eventually they get through the bone and have access to my marrow.
There is no numbing of the marrow, so it’s the most painful part of the procedure. The nurse came over and gave me a back rub while they pulled it out this time. Which didn’t make any difference, but it was a nice gesture.
Afterwards, I was chuckling to myself. I was laying on a small table with my butt exhibited, with three people surrounding me, like I was on a stage doing a performance. The things people do for entertainment these days….
Anyhow, that’s my (hopefully entertaining) story, we will see what the marrow numbers are in a few weeks.
My blood is back from the vampires. I haven’t had any run for two months now, so that was a change for me. I wasn’t having any test fears (Scanxiety) that a person can sometimes get, but I have been wondering how my numbers are looking.
I was especially wondering if my m band was a one month wonder or if I was going to sustain things, even though I cut out one of the maintenance chemos. I’ve been feeling pretty good, so my guess was that it’s still zero, and it is.
My reds (red blood cells) are still challenged. I was expecting them to get a boost since I dropped the cytoxan, but that wasn’t the case. I wouldn’t want things to get too easy, it’s best to be short on oxygen for a challenge 😜. Although my mcv is at the top, which means my red blood cells are large, so there can be fewer of them.
They also ran a blood test to check out my heart, which I was happy about since it’s possible carfilzomib can damage the heart. I had been wondering if anyone was monitoring things because I hadn’t seen any evidence of it so far. Thankfully, it tested normal.
Anyhow, here are the numbers:
KAPPA LIGHT CHAIN FREE
Normal range: 3.30 – 19.40 mg
Date
Value
Normal Range
Dec 1, 2023
3.06mg/L
3.3 – 19.4 mg/L
Oct 7, 2023
5.2mg/L
3.3 – 19.4 mg/L
Aug 25, 2023
5.32mg/L
3.3 – 19.4 mg/L
LAMBDA LIGHT CHAIN FREE, SERPL
Normal range: 5.71 – 26.30 mg/L
Date
Value
Normal Range
Dec 1, 2023
2.01mg/L
5.71 – 26.3 mg/L
Oct 7, 2023
3.03mg/L
5.71 – 26.3 mg/L
Aug 25, 2023
2.66mg/L
5.71 – 26.3 mg/L
KAPP/LAMB FR
Normal range: 0.26 – 1.65
Date
Value
Normal Range
Dec 1, 2023
1.52
0.26 – 1.65
Oct 7, 2023
1.72
0.26 – 1.65
Aug 25, 2023
2
0.26 – 1.65
WBC
Normal range: 3.7 – 11.1 K/uL
Date
Value
Normal Range
Dec 1, 2023
4.4K/uL
3.7 – 11.1 K/uL
Oct 5, 2023
4.9K/uL
3.7 – 11.1 K/uL
Sep 8, 2023
4.8K/uL
3.7 – 11.1 K/uL
RBC’S
Normal range: 4.10 – 5.70 M/uL
Date
Value
Normal Range
Dec 1, 2023
2.9M/uL
4.1 – 5.7 M/uL
Oct 5, 2023
3.15M/uL
4.1 – 5.7 M/uL
Sep 8, 2023
3.19M/uL
4.1 – 5.7 M/uL
HGB
Normal range: 13.0 – 17.0 g/dL
Date
Value
Normal Range
Dec 1, 2023
10.5g/dL
13 – 17 g/dL
Oct 5, 2023
11.3g/dL
13 – 17 g/dL
Sep 8, 2023
11.3g/dL
13 – 17 g/dL
HCT
Normal range: 39.0 – 51.0 %
Date
Value
Normal Range
Dec 1, 2023
29%
39 – 51 %
Oct 5, 2023
31.2%
39 – 51 %
Sep 8, 2023
31.9%
39 – 51 %
MCV
Normal range: 80 – 100 fL
Date
Value
Normal Range
Dec 1, 2023
100fL
80 – 100 fL
Oct 5, 2023
99fL
80 – 100 fL
Sep 8, 2023
100fL
80 – 100 fL
PLT
Normal range: 140 – 400 K/uL
Date
Value
Normal Range
Dec 1, 2023
109K/uL
140 – 400 K/uL
Oct 5, 2023
116K/uL
140 – 400 K/uL
Sep 8, 2023
150K/uL
140 – 400 K/uL
PROTEIN ELECTROPHORESIS INTERPRETATION, SERUM – No Homogeneous Band Or Spike Seen.
B type natriuretic protein Normal value: <=100 pg/mL
Value 43
>= 100 pg/ml may be associated with congestive heart failure. Other causes should be excluded. < 100 pg/ml clinically significant congestive heart failure unlikely. Clinical correlation required.
It’s something that I think of quite frequently these days. I’m mean, doctors have seen some horrific things due to bacteria, so a bunch of it is very justified. But I feel bacteria is not fully understood, and medicine just takes the approach that they normally do, and nuke the heck out of it.
I’ve thought vaguely about bacteria for a while, but I really started contemplating about it at the beginning of the year. My dog Yukon had a medical procedure, and they put him on antibiotics afterward. As I mentioned in a few other posts, I had been working with the garden soil, which involved a lot of manure.
Yukon does not eat manure, as some dogs do. I was spreading it around on the ornamental plants in the front yard, where he spends a lot of his time. He had been taking antibiotics for about 7 days. All of a sudden, he started chowing down on the manure.
“That’s weird” I said to my wife.
I started thinking about, when he was a puppy, he had an infection and the vet put him on antibiotics. He snacked on some manure while we would go hiking, that time as well. Those are the only times he has eaten manure. He ignores it the rest of the time. And believe me, I still spread it around a lot.
What are his animal instincts telling him?
I have a few cancer theories, and gut bacteria being one of them. Cancer develops from a dysfunctional immune system. Everyone has cancer cells, but most people’s immune systems wipe it out. Your immune system comes from your gut. Wouldn’t it be logical that people who have cancer (or other health problems) have a significant problem with their gut?
Our gut should be like healthy garden soil. Full of life and diversity. I do believe that most intestinal troubles, weird unexplained rashes, chronic inflammation and maybe autoimmune diseases are all from your gut being out of wack.
I know I personally was exposed to way too many antibiotics, as well as a lot of other environmental toxins. I felt like any time I went to the doctor with any sickness, I was prescribed antibiotics. “It’s most likely a virus, but take these antibiotics just in case.” It took me too long to stop and think about the side consequences of taking so many.
I also find it curious, that veterinarians seem to be very pro probiotics, especially after a course of antibiotics, and will even prescribe probiotics for an animal.
Try to ask a human doctor, especially an oncologist about probiotics, and in my experience, they put on their politician face and dodge the question or try and pass the buck. It’s very frustrating.
To be fair, there are some doctors who are currently studying gut bacteria and the system on a whole. It also seems like the studies are picking up steam. There are even some studies from hundreds of years old. Ever hear of yellow soup from ancient Chinese medicine? It’s worth a google search and read, if you aren’t squeamish (dogs are definitely not squeamish about it).
I came across a study earlier in the year, unfortunately I can’t find it anymore. It was talking about the relationship of a healthier gut micro biome and people achieving MRD negative status from a stem cell transplant. People who had a better gut were more likely to be MRD negative. After reading that, I started eating probiotics foods prior to my transplant and started eating them again as soon as it was safe for me to do so afterwards.
While trying to find the previously mentioned study, I came across this one. Memorial Sloan Kettering Cancer Center wrote this piece, “Fecal Transplants Boost Helpful Microbiota for Stem Cell Transplant Patients”. Basically, if you don’t want to read it, people who had a more diverse micro biome recovered better. It also said people who had an allogeneic bone marrow transplant (donor stem cells), and had a fecal transplant, didn’t suffer as much of graft vs host disease.
That’s huge!
I actually had a chair next to a guy one day at Stanford, who had graft vs host disease from an allogeneic transplant. As I mentioned, they only have “privacy curtains” between the chairs, that don’t really provide much privacy. I saw the guy’s pictures of his rash. I went back to the apartment that day and read up on graft vs host. I could tell he had it severe, and his odds of being alive in the next six months we’re not very high.
Would a fecal transplant from himself, collected prior, saved his life? Possibly. If it was an option for myself, although I did well, and I had an autologous transplant, I would have given it a shot just to increase my odds.
Sometimes, I wonder whether a drug works for you or not, or how well it works for you depends on your bacteria in your gut? Chemotherapy eventually is no longer effective for you and they have to switch to another kind. Is that because your body/cancer just got used to the chemo? Or is it because the bacteria in your gut that helps process it is no longer viable or around? It would be a fascinating study.
But I don’t believe it’s as simple as popping in a bunch of probiotics.
“Take this pill, with 6 ka-gillion beneficial bacteria per pill, and all your woes will be cured!”
I believe you can have too much of certain types of good bacteria in you as well. I also feel, a hunch, there are things like micro bacteria, like micro nutrients, that are supposed to exist in your gut. Too much of any bacteria including good ones, don’t leave room for the lesser bacteria.
I don’t know about you, but my neutrophils are high enough, so I’m going to keep imputing good bacteria from probiotic sources such as yogurt, sauerkraut, beet kvass and whatever else I come across (diversity!) and pop an occasional probiotic pill. Couple that with continuing to eat lots of vegetables for the bacteria to thrive, let’s see what can happen. The bacteria battle is constantly happening within me, between the killing (chemo) and the replenishing.
Wouldn’t that be something. The cure for so many diseases, including cancer, would be a bacteria transfer from someone with a healthy intact gut (maybe from someone from 200 years ago or an Amish person). Something that is free and flushed away every day. (I’m not advising you to DIY).
Now that’s something that would keep up pharmaceutical companies at night!
I had my first infusion of maintenance carfilzomib and pills of cytoxan the other day. I had them both prior to my transplant, so my body has prior experience with them (or so I thought), so I didn’t think it was going to be much of a deal. I was a bit tired, so I went to bed a little early that evening.
I got into bed and tried to get comfy. My wife came to bed about an hour later. I was still awake and asked for the thermometer since I was feeling a bit cold. We are going through a heat wave and it was 95 degrees outside, and we don’t have an AC, so it was a little unusual.
98.9 was the reading.
I laid there for a bit longer, pulling up the sheet to my neck. I was starting to shake a bit. I got a fever when I first started carfilzomib and cytoxan months ago, so I guessed I was going through it again since it had been awhile.
99.8 at the next check.
I was really starting to shake, so we added another blanket. Time went by, and I added the comforter. I had all my winter blankets on and it was still quite hot outside. I took a tylenol trying to get my shaking to knock it off, so I could sleep.
102.6 the thermometer read a little while later.
Everyone who has been on chemotherapy knows 101.4 is that magic number when you call the on call nurse and most likely head to the ER. I didn’t want to call, since I had been through this before with these drugs and talked about it with the oncologist last time. I knew they would have dragged me down t the ER to get checked. They (and I as well) are very concerned about infections, but I knew this was just a chemo reaction.
Phase 2 of my reaction was about to begin.
I feel like a lot of people have conversations with themselves when throwing up is involved. Sometimes the buildup lasts for quite a while. “I don’t want to throw up, maybe if I lay this way or that way, I won’t puke.” I didn’t have any buildup or warning.
For a bit of dramatic effect, I’ll narrate the conversation between my body and head.
“Jothi! Get up right now!
“Why?”
“We are going to throw up right now!”
“Really? I don’t really feel nauseous.”
“We are doing this right now! Make a run for it.”
I went to the bathroom and almost immediately threw up. I found it very funny and ironic. I didn’t throw up at all during my transplant or at all during any of my previous times on full strength chemo, and I puked with “maintenance”. Go figure.
I got back into bed and started to shiver again. In hindsight, that probably was not a good omen for my stomach and esophagus. Half an hour later, I asked my wife for a zofran to try and settle things down. Twenty seconds later, my body said:
“Let’s do this again.”
“Are you serious!? We just did that!”
I just got into the bathroom again, and out came the remainder, and it felt like my intestines and liver as well. I got back into bed, with my shakes gone now, and promptly fell asleep for the rest of the night.
My saint of a wife volunteered to dispose of my two rounds of half digested dinner. I only made it to the garbage can both times, so it was very kind of her.
When I woke up in the morning, I didn’t have any fever or vomiting. I spent the day replenishing my fluids.
It’s only been about 4 months since I was on carfilzomib and cytoxan, but I forgot all my do’s and don’ts for those drugs. Maybe I should write a post on it, so I can read it.
But jeez, my torso was sore! I haven’t thrown up at all, probably in nine years. I guess you must have special puking muscles, and mine weren’t at all developed. I wonder if they have a work-out for that?
“For the low low price of $19.99, you can get our puking muscle training program. Strengthen your back muscles, side muscles and abdomen. We guarantee you can puke 5 times in a row without getting sore, or your money back!”
It is test and doctor visit time, post transplant, for me. I had my meeting with my new myeloma specialist today. My old one left to go work for a drug company, so I had to get a new one, which was a bit of a challenge to get, surprisingly.
In my post transplant meetings with Stanford, the doctor kept repeatedly recommending I go on Revlimid for maintenance. In all my meetings with that doctor, I always had the feeling she would rather be off working on her projects, rather than working with patients. “Revlimid is what is normally done post transplant.” Her recommendation of revlimid, showed me she didn’t actually take the time to read my file.
To be fair, she is a transplant doctor and not an oncologist or myeloma doctor, but still, it would have been nice for a little effort on her part.
I finally had to say, “My case is not the typical myeloma case. I’m four years into myeloma and I’m just doing a transplant now. I’m already refractory to revlimid.”
“Oh really!?” She replied, looking flustered, rapidly clicking on her computer, and started trying to recover. “Let me review your case with one of my colleagues and I’ll get back to you.”
I tell you, it’s hard enough dealing with cancer without trying to manage your doctors!
Hence, my reason for paying out of pocket for a myeloma specialist at a different medical institution. I’m really glad I did. This is only my second meeting with a specialist, a year apart, and I can tell their myeloma knowledge is significantly better than my other doctors.
This new specialist told me almost right off the bat, that he is the leader in MRD (minimal residual disease) research. A mrd test is the best test you can have done for blood cancers, looking for remaining cancer cells. I’ve been pestering my regular oncologist for this test and he finally ran it with my last bone marrow sample. I’ve been waiting and waiting for the result, and I guess the specialist had it.
3 myeloma cells in 2,600,000 normal cells. My goal was zero detectable cells (MRD negative or MRD zero), I might as well swing for the fences. Second best is 1 in 1,000,000. I almost hit 1 in a million, just missed the mark. Anyhow, he was quite pleased with the numbers. His goal is to get me to MRD zero.
Although, I was thinking about the MRD test. It is only a sample of the marrow from a specific section of your bone where they pull the marrow from. So you can have different values at different spots in your bones. MRD positive in your left hip, MRD negative in your right. So I guess the MRD result is essentially flawed from the beginning. But I suppose it gives the best idea of what’s generally going on, since blood tests aren’t this sensitive.
I was thinking of the analogy of a city. If I had a city with a population of 2.6 million, and three of those people were crappy people, I would be doing pretty well. My city used to have a lot more crappy people in it, so I’m glad they are gone, but I still have work to do.
My regular oncologist recommended using carfilzomib as maintenance. I was on it prior to transplant, so that makes sense to me. The specialist recommended a higher dose, saying what was recommended wasn’t going to get it done. He also added cytoxan pills, I was also on that prior to transplant, which I’m not too excited about. It’s not an intelligent drug, and it just kills everything. I guess it’s all the lesser of two evils, maintenance versus active myeloma.
I think I’m going to be a bit more beat up from this maintenance than I was originally thinking, which is a bit of a bummer for me. Hopefully we can lessen the drugs over time….
I had a simple strategy for my stem cell transplant. I thought about the procedure for a little while, and this is what made sense to me. For me, it’s all about increasing odds and outcomes. I viewed this transplant as a major ordeal for the body. You wouldn’t get off your sofa and do a decathlon! Why would it make sense to get off your sofa and do a transplant? I went into transplant training.
The procedure in its essence is killing off your bone marrow and therefore your blood as well. Trying to wipe the slate clean. It is regrown from stem cells that were collected from yourself previously.
My step one, thinking about it logically, I wanted to have the highest quality possible of stem cells that were going to be collected. After all, this little bag of stem cells is what was going to regrown all my marrow.
I’m a huge plant person. Growing plants isn’t complicated. Give them the nutrients, light and water they need in the right amount and they thrive. Humans aren’t much different.
I wanted to spam myself with nutrition. I tend to do that all the time, but I made an extra effort. Your food is your cell’s building blocks. Healthy grains, berries, a rainbow of vegetables, lentils, healthy proteins and oils. Diversity is the key.
(👈🏼 Bitter melon is great for detoxing your liver, yes, it’s very bitter).
Second, I wanted to detox my body as much as I could, from all the chemo and drugs I had done. I mainly did this using a little personal infrared sauna. I sat in the sauna daily at 170 degrees and let my body sweat out the junk it could. Besides the big nutritional benefit of fresh vegetable juice, it also detoxes your organs, particularly the kidneys, liver and intestines.
Thirdly, I increased my exercise regiment. Walking, running, weight lifting and exercise biking. I also made it a priority to go hiking for miles, as much as I had time for. Sweating and heavy breathing, helped detox. Increased breathing, increased oxygen for my cells. Plus, hiking in nature helped my mental facilities and forest bathing can have a positive effect on cells.
Fourthly, I needed to work on my mental game. I increased my breathing, meditation and Qi gong. I felt it was important to have a level calm head, so I could overcome the mental lows that I knew were coming up. I went over breathing techniques in my How to stop freaking out post.
Meditation is the best way to keep control of your mind. Early in my cancer journey, for some reason, I was resistant to meditation. I kept hearing how beneficial it was, and I eventually overcame my resistance. It was the single biggest reason for my mental U-turn out of cancer negativity. I highly recommend learning a simple practice and doing it daily. Qi gong is kind of like a walking meditation (I’m planning a series of posts on Qi gong upcoming).
I also feel that the power of music is underestimated. I worked on creating a playlist of uplifting and positive songs that I could listen to. When you’re down in the dumps, sometimes music can help flip your script. I ended up with a wide variety of genres that clicked with me. I used it to get my positive vibe up, especially while cooking (didn’t you know food tastes better if you dance while it’s cooked?) Although, during the transplant, I mostly listened to my favorite pianists, Ludovico Einaudi and Helen Jane Long (Ludovico’s songs Ascent Day 1 and Nuvole Bianche are epic).
So these were my pre transplant regiment. During transplant, I once more wanted to keep up as much as I could on the nutrition. This was the building blocks of my new cells. I wanted to create good tissue and give my cells what they need to thrive. I was really excited when they said I could drink fresh vegetable juice, I drank it daily.
Besides the vegetable juice, it was also imperative for me to keep up on my fluids. Drinking was also a challenge. I drank water, coconut water and bubbly mineral water for the minerals and it helped with the nausea. I also asked for if fluids every day whether I needed them or not. Certainly high dose chemo is highly toxic itself and the fallout from it is a lot of dead cells. I wanted to flush things out as much as possible once the chemo was done doing its job. You have to protect your kidneys!
(A juice man created by my daughter 👉🏻)
Having my GI tract destroyed was a challenge for wanting to eat anything. I mostly ate my normal breakfast just in a smaller portion. Mung beans and vegetables for lunch and whatever I could get down for dinner (by dinner I usually wasn’t interested in eating at all). I do feel like having the wholesome diet helped a lot with not having extreme nausea and keeping my blood and electrolytes up.
It was also important for me to keep moving every day and get exercise through it. After breakfast, I would do my Qi gong exercises. I would then take a rest and then no matter how tired I was, I’d scrape myself off the sofa and go walking in the park every day. I do believe movement is life and if you want to keep living, keep moving.
I’ve gone back to my pre transplant regiment except for the sauna, which I’m not allowed to do until day +60. I have random pain in some of my tissue, which can be a sign of toxicity. I’m looking forward to some good sweating. My GI tract went back to some semblance of “normal” at around day +27. The doctors and nurses keep telling me how good my blood numbers are. I feel like I got through it easier than some people, from reading their stories.
This is my strategy, I guess we will see where the chips end up. If the myeloma is going to thrive through all this, it’s going to have to do it eating broccoli.
Carrots Over Cancer 